Cyclosporine

Well Austin's 8:15 MRI got moved to 11:15 and it was noon before they took him to the scanner. Dr. Grimley also wanted to do a lumbar puncture in Austin's spine while he was under sedation. This is a type of blood culture where he can see if there is any viruses in his spinal fluid. Dr. Grimley did this right before the scan. It was almost 3:00 before we got back to the room. When we got back Austin drank 4 ounces of milk right away. About 3:30 Dr. Grimley came in. He said the MRI wasn't really conclusive on finding the drug side effects on the brain. He did comment on the tissue behind the eye again. He said once again it hasn't gotten larger but in the three dimensional view it does look like it has gotten somewhat smaller. He did say that there was a spot on the back of Austin's head, he called it something but I can't remember the word he used. It has a little fluid there basically. He said he didn't think it was Neuroblastoma and it was there on the last MRI. He said the will do another scan in a few weeks and check it again. He said it was probably something they will just continue to watch. There was no virus found in the spinal fluid. He said now looking a the bigger picture he feels it is Cyclosporine Toxicity. His levels of the cyclosporine in his body are still high and he was been off the drug for days now. A lot of the side effects lean toward that it is the cyclosporine too. It will take a little while for it to get out of his system. He will start another drug Prograft this weekend. He said there was nothing else to do so he was sending Austin home. Yeah!! So yes we are home.When we told him we were going home he was ready to leave right then. He asked for my purse (which means bye bye we go).We tried to explain to them that we had to wait for the nurse. Yeah good luck explaining this to a two year old. So finally after the nurse took his needle out Nannie got Austin dressed as I went over discharge instructions with the nurse. He brought over the hospital blanket that I had been using. I guess he thought it was mine. He was wanting me to bring the hospital blanket home. He was so silly. We do have a clinic appointment tomorrow morning for his blood draw and to check his fluids. He is SOOOO happy to be home but is very needy. Not trying to be mean but I have to carry him every where because one, he doesn't have the strength to walk and two, his feet are still real sensitive. I just gave him a bath and he is laying on the couch watching movies. He did eat some of his pizza. Austin seems to better but not at all yet himself. It is going to take some time. So each day he will get stronger and more and more back to himself again.

Elizabeth

Still trying to figure it all out......

Well Austin is somewhat better today, but still not himself. All he wants to do is sleep. I did get him to eat some baby food bananas this morning but only able to get him to sip on his drinks. We are still having to give him Tylenol as he has some kind of discomfort that we can not figure out. Grimley feels that if he sends him home today we will be right back in tomorrow with dehydration and I agree. He wants to do an MRI of his head tomorrow morning. You can get a better picture of the brain on an MRI. He is puzzled as to what is going on with Austin though he feels it is either the side effects from radiation or one of his medicines, cyclosporine, that can effect the brain. Both can go away with time. He has checked for viruses in the blood and the urine and they all come back negative. Dr. Grimley said it could be graft vs. host disease but with that you have diarrhea and he doesn't have that so he throws that one out. He did finally have a bowl movement last night and just had another one today. He hasn't been as cranky today as he has been the last few days and in fact he just got up and was talking to Nannie and I some. I asked him if he wanted his toys and he shook his head yes. He did this yesterday but it only last a few minutes and once again it didn't last long today. He is still up though watching Shrek but doesn't want any of his food or drink. I am going to try the baby food bananas again and see if he will eat that. I hate forcing things in him but with Austin if you do a couple of forceful bites he starts eating it. Then too he will be NPO tonight if they are going to do an MRI on him tomorrow so that doesn't help with the eating and drinking process. So hard right now on him. It doesn't help that he is turning two and going through the terrible two's and possibly could be teething. We will see how our night goes and how the MRI is tomorrow and go from there.

Elizabeth

Scan complete....

We got back to the room form the scan at around 2:00. They only had to give him laughing gas and not general anesthesia for the scan. It is a very quick scan. Wasn't too long after we got back when Grimley walked in our room.He gave the thumbs up. He said the scan looked good. The brain looks fine. The eye shows still some soft tissue but it is still early. It could still be swollen from radiation. He said it isn't too much smaller than last scan but it hasn't gotten any larger. He said it may go down some and it may stay as scar tissue. Grimley doesn't think that Austin is in "pain" from something just has the "blahs" from transplant. Some kids experience flu like symptoms. He said he isn't having symptoms from his flu, he just still has the virus in his system that he can pass to someone else. We gave him some Tylenol to see if that helps instead of giving him some heavy duty pain meds. Morphine just makes him sleep all day. So as long as no one is messing with him he is fine. If anyone tries to touch him, even me, he screams. Doesn't want to eat yet and only drinks a little bit. They have backed down on his fluids and we will stay another night and see how he is tomorrow. It may just be something we have to put up with for awhile as there isn't really anything they can do. He doesn't think it is graft vs. host as he would have diarreah and he is constipated right now. Grimley feels that less is more for Austin right now. Meaning he doesn't want to do anything different and just let Austin ride it out. He feels the more he does could disturb the grafting that is already going on. He is asleep right now, so I am hoping when he awakes he will feel like eating some and drinking.

Elizabeth

Sorry Austin. We have to stay at the hospital.....

Sorry for a late post today but I had to wait for Jason to bring my computer to me. Yes, we are at Methodist Hospital. Austin got admitted today. Not due to fever. We had another bad night of no sleep. It seems Austin is in pain. Today in clinic they were going to have us stay all day for fluids as Austin isn't peeing. They gave almost three bags of fluids and also blood and he still didn't pee. We put a bag on him for a urine sample and I kept checking and checking and no pee in the bag. Finally about almost 5 he finally went. It seems like it hurts him to pee and he must have been dehydrated so they decided to admit him. That way they can control his pain and get him hydrated again. They have run a bunch of test as they are not sure what is going on with him. Grimley also decided to have a CT scan done on Austin's head. He said it isn't that he thinks anything is going on there put for his own piece of mind so he can sleep at night. We said "us too!!!". They wanted to do the CT scan tonight but there isn't any anesthesiologist here tonight and Austin won't sit still so they have scheduled it tomorrow morning. I think it is at 10am. Hopefully this will be short stay but we will see. Well I will update again tomorrow. Hopefully Austin and I can get a good nights sleep.

Elizabeth

Busy Monday....

Well the fever stayed down!! We made it to clinic with a low grade fever of 99.8. It came down all the way to 97.5 today. Today his red blood count was at 5 and platelets were at 7. So he needed both blood and platelets. Since his blood count was so low and they only give half of a unit at a time he will need to go tomorrow for another blood transfusion. We haven't seen a rash on him since Friday and we were wondering if that was a bad thing or not. Grimley said that with a blood count of 5 there will be no rash and a lot of times the rash will go away and come back again. It doesn't mean that the transplant is not working. There are plenty of other signs,like his feet are sensitive, to tell him that things are going in the right direction. They did take another sample from Austin's nose to check to see if he still has the flu. Grimley also had them take a blood sample to send out for his trial to see if he is grafting yet. It can take up to about a week. He said possibly we will hear back on Friday but maybe not until Monday. We didn't get much sleep last night with Austin tossing and turning, checking for fever, getting Austin to drink, and Austin being in pain. He finally fell into a deep sleep about 6:00 am and I had to get him up at 7:30. Poor guy. On the way to clinic he fell asleep. During clinic he couldn't get comfortable and acted like he was in pain so they gave him a small amount of morphine to take the edge off. He finally then got comfortable and has pretty much been asleep since then. We hit the bad rain on the way home and got home about 5:15. He is now asleep on the couch. He hasn't drank or eaten much today so I am hoping he wakes up hungry and thirsty. We had back to clinic tomorrow and we might have to borrow Pop's boat to get there if this rain doesn't stop. Austin would enjoy that. LOL

Elizabeth

Fever watch...

Well Austin is still very punky. His feet hurt. He doesn't really play at all. He lays on the couch and watches movies. He gets down and walks around only a little bit. He gets up to go to the kitchen for me to get him waffels, pancakes and soft pretzels. That's what he has been eating. Tonight for dinner we had pizza and he ate a whole slice. Way to go Austin. But a fever sprung on tonight. He has been running low grade fevers of the highest 99.5 but tonight it went up to 100.9. I called the hospital and they called the on call doctor Dr. Wall. They said since he has an appointment tomorrow to go ahead and watch it. If he gets higher or something changes like vomiting, breathring trouble, ect to give them a call back. So far it hasn't changed and he is in bed. I have to give him meds at 9:45 and will check his temp again. He is so good when I go in there he just lifts his arm for me to put the thermomater under his arm.

He just woke up. I took his temp. Down to 99. Thank you lord. Keep the prayers going. I put a post on Austin's myspace page about his fever and got tons of messages already on people praying and the fever is coming down. Now if it would just stay down. We will see what tomorrow brings. Have a great Monday!

Elizabeth

Wake up Austin.......

Well sorry for the delay in the blogs. How this week went by so fast. We had Thursday off from clinic and it was nice. Austin went to bed at 7pm Wednesday night and didn't get up but once in the night to get a drink. Then he slept to 8:30 the next morning. Can you believe that? Austin slept that long? He had a three hour nap on Wednesday too. So yeah, Wake up Austin. LOL Wednesday he had a good day. He is getting a little bored. If they weather would clear up and stay dry then he could go outside and play. I asked him yesterday if he wanted to go for a ride in the car and go "bye,bye" and he picked up my purse and was at the door. I guess that was a yes.

Today is another story. He woke up with a temp of 99.4. He was punky all day. His feet hurt which is another side effect to the grafting and meds. Grimley said the older kids say there feet are "hot" and the little ones just stop walking. Austin hasn't stopped walking yet just slowly and carefully. They want him to work on his drinking and not worry about his eating so much. He has maintained his weight well so he has a little to give. Grimley gave him an A+ on his rash. He likes what he sees. As long as it comes and goes like it does where are good. If it stays we will have to put him on oral steroids which he doesn't want to do. He came home and took a long nap. When he woke up he was so hot so I took his temp. It was a 100. I was ready to pack the bags thinking we will be at the hospital tonight. A few minutes later I felt him and he was nice and cool. I couldn't believe it so I took his temp. It was 98.2, couldn't believe it came down so fast. I am just watching it closely as to we have to call if gets to 100.5 or higher. Please pray it doesn't get any higher. There is no room on the floor and he has to have a room by himself because he has a touch of the flu. Yes test came back today he still has the flu. Poor Austin. It is weird that one day he is fine and the next he feels like crap. So tonight lots and lots of fluids and rest. We are off from clinic for the weekend and go back on Monday. He got some fluids today in clinic so I am sure that helped him out today. Well I better go Austin wants to sit in my lap to watch Over the Hedge.

Elizabeth

Sleepy Austin....

Today was a long day I clinic but I can't complain, we could be stuck in the hospital. I would rather go to clinic every for all day then be stuck in the hospital. Once again Austin did not have a good night. I finally gave up about 2:30 this morning and gave him tylenol. He must be in pain is what I am thinking. After about thirty minutes of tossing and turning he finally driffted off to sleep and stayed asleep. He then didn't want to get up this morning but I don't blame him. We got to clinic where Austin didn't even want to watch Wiggles he just wanted to sleep. Austin's counts came back with red blood cells at 11.1. We thought wow we don't need blood. He isn't drinking much and so they hydrated him with fluids. He is still very fussy and doesn't really want to be messed with. Dr. Grimley came by for his rounds and said he thought that the counts were off and that he needed blood. So they ordered blood but there was a shortage so we had to wait. They re did the CBC and it did come back that his red cells were at 6.5, so yes he indeed needed blood. They gave him benadryl and a steroid before the transfusion so he wouldn't have reaction. Right after the Delores started the trasfusion Austin became really fussy and couldn't get comfortabel so she called Dr. Grimley in. He said to go ahead and give him some morphine. So after that Austin passed out. About almost half way through the transfusion Austin broke out into a rash. OH NO! They all rushed in tryig to make a decision but he started to fade away. They were actually excited because all and all it is the NEW cells making the rash. He is grafting and not a reactoin to the blood. Yeah Austin. He slept the whole time. We are on watch for a rash that appears really fast and doesn't go away. Daryl the nurse practioneer said they don't usually get to see this because this usually happens in the bone marrow transplant kids and at this point they are still in the hospital. So this is all an experience for them. He said it is such a miracle. Boy it is. We didn't finish up until about 5:15 and then we stopped to get Jason a card because it is his birthday today. We wasted some time so we wouldn't have to sit in traffic. So we are home and enjoying it.

Elizabeth

Punky Austin....

There is some kind of good news and some bad news. Austin is feeling bad again. He didn't have a good night sleep. We went to clinic today and was just so not him. With all of the symptoms of grafting. That is the some what good news. Which is a good thing but they don't feel good. So now we will go to clinic everyday for a careful watch. He got fluids and will probably need blood tomorrow and platelets later in the week. If he gets a high fever of course he will have to go to the hospital. The floor is still full so they don't want to have to do that. The bad news though is they swabbed his nose the other day and the test as finally come back POSITIVE!! Oh no!!! He feels probably bad because he might have a touch of the flu. I hate this. Man on man this stinks. They will reswabb his nose tomorrow and we will see. Please pray this is an error and he really doesn't have the flu. He doesn't need this right now. I feel so bad for him as he feels so sick. Thanks for the prayers.

Elizabeth

Our Austin is coming back...

Austin after his bath tonight in his teddy bear towel


Austin is feeling better. Eating some and drinking more. He doesn't want anything to do with milk right now. He is drinking Dr. Pepper (caffeine free). Only thing that taste good to him. He hasn't had any more poopy diapers and finally had some good pee diapers. He also ran a little bit of a low grade fever. It never got any higher then 99.1. Sorry for so much information. He took a long late nap today so He is still up but he is in his bed watching Diego. Grandmama and Pa brought pizza over for dinner and Austin enjoyed that. He enjoyed their visit and cried and started to wave bye when they told him they had to leave. He stopped crying and watched them leave waving goodbye. His new thing to say now is "hot" waving the steam away. He is so silly. We have clinic tomorrow at 9. We will see if it needs to be a long day or not. Well I better got check on Austin and head to bed. Have a great week.

Elizabeth

Waiting on a call back......

Well Austin woke up not vomiting and drank some milk. I gave him some 7up too but he only will drink that for me if I syringe it in his mouth. Go figure. His tummy seems to feel better BUT he started to have runny poopy diapers. I called the Transplant unit and we are just waiting for a call back.

We got our call back and they just want me to push him drinking and drinking. Said to go to the lactose free milk and stay away from cheese. They don't think it is graft vs. host disease yet, too early. So we will see how he goes. I guess tomorrow they could give him fluids in clinic if he isn't drinking enough. So my mission today is to keep him drinking. Wish me luck.

Elizabeth

St. Patrick's Day!!!

Happy St. Patrick's Day! Sorry for posting this so late. It has been a non stop day. We are clinic today where Austin's shirt wasn't the only "green" thing on him. He was so sick to his stomach. I don't know what happened. He ate breakfast and drank his milk and was fine this morning. We got to clinic and were only there like thirty minutes and the threw up all over himself. He needed platelets of course. He still had some rash on him from yesterday. They gave him benadryl and tylenol as premeds since he reacted to blood products. I attempted to give him his premeds and he saw them and threw up all over me. It was a mess. So I waited after they gave him benadryl to give him any meds. He kept his meds all down and slept through just about all of the transfusion. He seemed car sick the whole way home but didn't throw up. He even attempted to eat. When we got home I got his bath ready. Before I could put him in the bath tub he threw up. Wasn't much though. I gave him some zofran and he hasn't really thrown up anymore. We are just now battling him drinking. I finally got him to eat again and drink a little but it isn't enough. If he doesn't pick up his drinking he will end up in the hospital for dehydration. So please say some prayers that this sickness will pass and he will be back eating and drinking again. I was told today he was already not drinking enough. We are at day 10 post transplant. We still have a ways to go and I am praying all is going to go well. We are off from clinic tomorrow. I will have to call them if he doesn't start to drink in the morning. So if your up late and your reading this please say a prayer!!

Elizabeth

What did the blood donor eat???

It's Friday!!! Yeah!!! Austin has been feeling pretty well. A little sluggish but I believe from low red blood cell count. He has been a little better each day and still is drinking lots of milk. His eye is looking better but still bothers him some. Funny thing is it only really bothers him at clinic. Must be something in that room or what they use to clean. Today he need red blood cells like I thought. The transplant doctors don't premed like Dr. Patel does. They also don't give as much blood either. Patel gives Austin a while unit over usually four hours. Today they were giving him about half a unit of two hours. At about almost the end of his transfusion he broke out into a rash. For the first time ever Austin was having a reaction to blood products. The rash was getting worse. They stopped the transfusion and and gave him benadryl and a steroid. His mouth was on fire. He kept drinking his milk. Finally he fell asleep and slowly the rash would go away. Our nurse Delores had to fill out loads of paper work and had to take a blood sample from Austin to send to the blood bank. So probably for now on before blood products Austin should get premeds to keep him from reacting. It was funny what Daryl the nurse practitioner said, "did that donor it strawberries and your allergic to them?". It makes you wonder. Well we didn't get home until 5:30 and he is still a little out of it from the benadryl but seems to be fine to play with his toys. We go back tomorrow which we are pretty sure he needs platelets. His white cell count has dropped which we figured would happen. We are still praying for next week. The big week when we should see if the transplant worked. Please say a prayer that the new cells took and do the trick!!

Elizabeth

Eye for an eye...

Hey all,

Austin had clinic today. It was a long day due to needing platelets. Austin's eye is giving him trouble as well. Dr. Grimley thinks it could be from radiation. It tears all the time and lately he has been rubbing it along with crying. They have me putting drops in it as it could be dry or something in it. His nose is running a lot lately too. I finally broke down tonight and gave him some benadryl. Hopefully that will help. Other then that everything looks good. He is going to start going to clinic Monday/Wednesday/Friday which is great. He is taking his meds well. The only trouble he gave me tonight was putting eye drops in. I would be mad too. His eye is worrying me but I am sure I might be just over worrying. He seems to be able to see but scares me when he rolls his eyes and makes weird faces like it hurts. I am watching him like a hawk. Well Austin wants me to play so I better go.

Elizabeth

Looking good...

Hey everyone. Things are good. We are trying to get back on some kind of schedule even though Austin doesn't want to. He is doing well with his oral meds. One doesn't taste very good so I give that to him last and let him chase it with a drink. But he doesn't spit any of them out. I give him a nupogen shot everyday starting yesterday. They ordered prefilled syringes instead of a vile but the syringes have to much meds in it so I have to squirt most of it out. But it isn't too bad. We have been at clinic Friday and Saturday with today off. Everything looks good so far. We are enjoying being home and is the reason I haven't blogged in days. Austin keeps us busy. Wanting to play outside and go on walks since that is about the only places he can go.

Right now Jason just got home from a bike ride and walked in the door and Austin said as clear as can be "DADDY!" That is all I hear anymore is daddy. He is always looking for daddy. It is so cute. It makes Jason grin from ear to ear. We go back to clinic Monday. I am thinking he will need platelets soon. We will see. Hope everyone had a great weekend and a great week to come.

Elizabeth

Where is Austin, Where is Austin??

Home he is. Home he is!!!! Yes Austin is home. What a great feeling. He is a little light on his feet but he is home. We didn't leave the hospital until 2:45. Between waiting on the nurse practitioner and prescriptions it took a long time. He was napping so it was fine. He is already running around playing with all of his toys and his dogs. When I put him in his car seat to go home, I couldn't believe how tall he was. His head was further up in the seat. He is such a big boy. We have a bunch of meds that I have to put on a schedule for myself to give Austin. It can be so confusing. He will start getting shots on Saturday. Some meds are twice a day. Some are once a day. Some have to be at a certain time. Others can be anytime. Some he can't have until after clinic. Some are for weekend only. Oh boy. All and All it is great to be home.

Elizabeth

Thank you Cord Blood Donor....

Austin and his balloons. Thank you Aunt Amanda, Uncle Jerry, Dylan and Emily!!!


Austin eating Chick-fil-a after Transplant




Austin after radiation yesterday

Well Austin's transplant is complete. He did very well. He feel asleep during the middle of it. Well one of the premeds was benadryl so that made him sleepy. While he was asleep they brought in two wrapped presents. When he awoke Austin and his nurse Carlos opened them together. Austin said "WOW". He opened them very well. No hesitation. There is still talk of us going home tomorrow as long as no fever, he takes his meds, eats, drinks and of course Mommy has to give him shots. But I don't mind at all. Kind of use to it. One day I was able to give him his shot by myself. I was so proud of myself. Lately he hasn't been crying when I give him the shot. Man I am good. LOL. He is watching wiggles and eating Chick-fil-a.

Elizabeth

Today is the Big day, Transplant Day.....

I just ran into Dr. Grimley in the hall way. He had a blue ice chest in hand. He said I am on my way to go get it!!! Funny I thought. Just never thought it would come in a blue ice chest. Just thought I would share that funny with you. Austin is wild this morning. We just took his toys away because he is throwing them. He has been singing and dancing. He loves to roll around in the bed. Well I am off to get ready for 10:00 A.M.!!!!!

Elizabeth

Pictures

Austin's last eating out at a resturant "Do you like my boots?"



Last day at Dr. Patel's office


Austin stealing supplies at Dr. Patel's office



Austin just arrived at the hospital and waiting for hook up



Austin in his Wiggles shirt



Austin eating Cheetoes

Radiation came to end today.....

Well poor little Austin had to wait for his TBI today. It wasn't scheduled until 2:00 PM. He got up early this morning so was able to get four ounces of milk down before cut off. He did well with his radiation. It was sad to say good bye but nice to know it is over. Dr. Eng wants to follow up with Austin for a while so we will get to go visit, and hopefully only visit. He is still very worried about his height and says he probably will be short. This is coming from a man that is very short and says he will be short just like him. The nurse and laughed when Dr. Eng walked away and said I don't think so. So the nurse told him to grow a few feet in the next few months and come back and show Dr. Eng. LOL I took the coming back for follow up as a good thing. More like research to see how tall he grows and how his bones do. Before it was one follow up appointment and that is all. Two, I like the fact I will have still on board of the team of doctors to watch to make sure this nasty thing doesn't come back. He did very well in his last ambulance ride. Rode all by himself in the stretcher to and from CTRC. He directed the way back to the room for the EMT's and then when he saw his daddy in his room he pointed and told them "Daddy". So they said "hi daddy". Was so very cute. He did throw up when we got back but I am sure it was from the anesthesia and the backwards ride in the ambulance. Right after we cleaned him up he starting eating and has been playing and watching video's since.

Transplant is tomorrow at 10 am. So if we could pray at 10 am that the cells "cure" Austin would be great. I am thinking we will be in this room so we are just going to let the grandparents come up. So the big day will be here and then we should HOPEFULLY go home Thursday. Yippee!!!! I am keeping my hopes up!!!

Elizabeth

Austin's weekend went well. He started his ATG (rabbit serum) and to a few little red spots and a little bit of a fever. But after a few doses of tylenol the fever was gone. It didn't get higher then 100.1. Today is day two and so far no fever and no new rashes. The steroids are kicking in. He is getting steroids around the clock. He is acting very aggressive and loves to scream at the top of his lungs. It is already 2:30 and no nap yet. He even has had a dose of benadryl and still isn't asleep. He is watching Lady and the Tramp so soon he should drift off to sleep. I may just shut my eyes with him. The floor is still full so it looks like the roommates will have their transplant together on the same day. We are still on schedule. We will have ATG today and tomorrow. He also goes to CTRC tomorrow for TBI (total body irradiation). AMR (ambulance service) picks us up at 1:15 tomorrow. We talked to Grimley this morning and how the nurse suggested to do the ATG early in the morning tomorrow. He agreed because he like to do transplant at least 24 hours after the last does of ATG. We are still looking at going home on Thursday IF he is still eating and drinking (which he is) and no fever (besides the fever he gets with the ATG. BUT..... he may end up right back in the hospital, just depends. But like Dr. Grimley says it would be a nice break to get home at least and we will be in clinic probably on Friday. Grimley says Austin's counts are showing things are working. And that is after only one dose of ATG. Austin will be NPO after 8 am tomorrow. So shall be an interesting day. Later I will post a bunch of pictures.

Elizabeth

Austin hanging in there.....

Austin is still doing well. He starts his bad stuff on Sunday. It is a rabbit serum that can cause fevers and chills, to be expected. He is still eating and drinking very well. Sometimes it is a battle, but once he gets started eating then he does pretty well. We still have a roommate and the situation looks like it will stay that way. We will see. They say the 4th floor is full. No beds at the inn. Austin is sleeping right now. He got up at 7:35 this morning and took a good nap before lunch. He fell asleep around 9:15 tonight. We miss home and our dogs. We can't wait until we are out of here but each day goes by fast and before you know it we will be home and I hope we never have to be admitted again. I am praying to God that this is the answer to "cure" Austin's cancer. As there is no cure for Neuroblastoma, I feel the only reason is because there is not just "one" treatment that works and keeps it away on every child. Every child responds to each treatment differently. We are still waiting on that one treatment that stops this beast entirely. Please God help the researchers discover this treatment during the study of Christi Thomas' cell line. I do believe in miracles and know there is hope of finding a CURE!!!

Elizabeth

Chemo started.....

Austin went to bed around 10pm last night. We started around 9:30. We had to wait on his night time oral meds. He didn't get up until a little after 9 this morning and really didn't wake through the night. So he is pretty rested for his chemo today. He got up and ate pancakes and tried some bacon. He had a few bites of his bananas. Right now it is 10:19 so the Wiggles are on. He watched Lady and the Tramp for the first time last night and he kept calling the dogs. I think he misses his dogs already. We are still trying to get use to having a roommate. His roommate is a boy a little bit older then him maybe a few months older. They are very curious about each other. It is very cute. Some times when the little boy cries then Austin does. He is not use to have another child around. The poor little boy's pump kept going off last night so they had to mess with his lines which messed with his sleep. Other then that things are fine. Trying to keep Austin busy and on some what of a schedule. We will see how it goes. I did find out that he is having cytoxin which is the same chemo he has had. So we kind of know what to expect. I am wondering if he will do the neutropenic/fever thing. He has been doing cytoxin with topotecan so I don't know if it is the combo that does it or what. So we shall see.

Elizabeth